What is Retinitis Pigmentosa
Retinitis pigmentosa, or RP, is a genetic eye condition. In the progression of symptoms for RP, night blindness generally precedes tunnel vision by years or even decades. Many peop...
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Hi, my name is Lorrie and I found out that I have Retinistis Pigmentosa a year this Jan. During the time i found out I have already lost so much vision. I only have central vision and will be using the cane and low vision aides in Feb. I have a son who is turning four in Feb and all i want is to watch him grow up but not sure if that will be possible. The eye doctors haven't started me on treatment and I found out that I had to started losing my vision in late childhood. No one has put any of the pieces together and it took me telling the eye doctor what was going on to look into it. I guess it's just hard because i know so little about it and haven't really gotten any answers. I'm just looking for support. I am young and not really sure what my future holds but too determined to go on disability. I am a single mother and can't raise my son on that little money. I am seeking employment but i have to learn how to work around my disablility first. I guess I just want to get to know someone with this condictions since i feel alone in this and if their is a future in working. I need to start dealing with this head on instead of brushing it off so that I don't fall into a depression. any advise on how to deal with this and what my future holds or just to chat with someone who has rp and knows what i'm going through will be helpful. Thanks.
Posted on 01/29/09, 10:01 am |
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Hi Lorrie! My name is Jill and I too was very recently diagnosed with RP. Actually it was about 3 months ago. It took some time for the doctors to put it together for me too. I know you must feel very overwhelmed right now. It is a huge adjustment. Where do you live? There must be a national organization available like the CNIB (Canadian National Institute for the Blind) here in Canada. They can give you tons of support in every area from jobs to training to helps at home to support groups near you. If you're not sure, contact your doctor and ask for the number. It is helping me already just to know that I'm by no means alone. Neither are you. Are you on facebook? There's a great RP support group on there as well which is just basically a good idea of the many, many people affected by RP and the ages are all over the map. I would be happy to support you in any way I can! 
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I've got rp also. I was told I had it 5 yrs ago. I'm in the U.S. and Services for the Blind in your state if you're in the U.S. can help you. Hope this helps you a little.
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hi my name is diane i cant give you any advice on whats to come etc as i was diagnosed 5years ago but only now is it excelerated and trying to get to grips with it myself. i wil tell you one thing latley i have been making every miute i have with my two older daughters count what i mean is when i look at them i really look if that makes any sense.i hope you can keep your chin up thinking of you and if you want to chat anytime i am here . think positve thoughts and know you are not alone di
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Dear all,don't lose hope.I am Sirisha from India.My eyes are perfectly alright and pray they do remain so for the rest of the life.It's my brother(younger) who has RP and he is just 22.It was diagnosed when he was 16 and it might b there since he was around 5/6,just because he stopped playing games/sports around the same time,because of his visual impairment.The doctors took so long,probably 10 long yrs,just to find out what he was suffering from,and there is no solace even after the diagnosis.There is no medicine for RP in allopathy,and none of the alternative medicines promise much.We tried homeopathy/Ayurveda/acupuncture.The last one's utterly useless,the improvement stays for about 10 days after the treatment.It is sooo much pain,i simply cant put it into words,to see him suffer.Nevertheless,if we lose hope,we LOSE everything and hence,we are hanging to it with EVERYTHING we have.If any of you are interested in the alternative medicines I mentioned above,do let me know.I will post the whole info pertaining to it.
Since Obama lifted the ban on stem cell research,there should be some break through in the pipeline ,in another 3yrs(I have been hearing the same thing fro m past 6 yrs...I hope it is true,this time atleast). Be optimistic and HOPE for a miracle. Good day.
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Well hello!!! I am 26 years old and I was diagnosed with RP about 2 months ago. I am also hearing impaired, which leads me to think I have Usher's syndrome, which is a genetic disorder that causes RP and hearing impairment. Just keep your head up and hope for the best!! The medical understanding of this disease is only getting better everyday. I know for a fact that there will be gene therapy or stem cell therapy in the next decade!!
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I just wanted to say that health is a journey and that we are not our eyes so it does stand to reason that we would treat the whole body. I don't know if any alternative medicines will cure the RP but I can promise you that with diligent use and patience, a healthier lifestyle is going to make you better in all areas of your health. There is no set way of treatment for all people in alternative medicine. Each individual will be assessed and treated accordingly as there are many different types of rp and many different variables within each person's health issues both physical and emotional. There is no quick fix and it may take more than one try to find the right combination of helps to fit you. I do not agree (respectfully) that alternative medicine offers nothing for RP or that acupuncture is useless. I'm not meaning to hold out false hope but I believe a healthier body takes time and diligence and a belief that you will make a difference. Even if you become healthier in every other area of your life your quality of life WILL improve. I have RP which has progressed very quickly in the last 2 years and I'm commited to sticking with a program and always looking for new ways to be healthier and happier. Don't stop trying anything that improves your health. I wish you all well.
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